Ibrance (Palbociclib)
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Great news, RosesToeses! Who is your insurance company? Thank goodness for the copay card!
I'm still waiting to hear, but every new "second liner" who gets approved is good for the rest of us!
When I am approved and I get the co pay information (I assume it will be very high), I'll ask the pharmacy about the Pfizer card. Or should I just go online and try to get it on my own?
For those of you using the Co-Pay card, did you get it through your pharmacy, your doctor's office, or on your own by going online?
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Sandilee, I was going to add my insurance co in the post but I can't remember who it is! Rx Solutions, or something like that--it's on file at the pharmacy we use and dh has the card right now. All the drugs given in the hospital (chemo, faslodex, Xgeva) go through our BCBS medical insurance, but this is a prescription so it's under the drug insurance which is a different carrier for us.
For me, I applied for the card online before the pharmacy talked to me and that made it easy when I called and they discussed the "high copay" flag to read off my number on the card and move on--it eliminated a few steps that way. The "card" is simple to do online and you print it off instantly, so I don't think there's much downside to having it set beforehand.
Also, I phoned my drug insurance company when I first got the prescription from my onc and they told me my coverage and price/copay for the drug--might be something to try so at least you have some idea what's likely to happen.
Good luck with it!
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Congratulations Rosestoeses. Your MO is correct you are second line tx. Good luck with the Ibrance. Hopefully sandilee yours will be in very soon!
Pearlady, the vit c and ashwanga worked tremendously on my platelets so far! My platelets actually went up over 250 this week. Now we need to work on the ANC which is 1.2 right now and my MO is threatening to stop it if the counts are under 1.0 on Monday's counts until they come back up. Any magic bullets for them? I asked about neupogen and he said not with thismed. there is so much different info going around. Well, if I get to day 18 that's almost there.
Good evening to all....Myra.
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My MO said no to Neupegen with the Ibrance too. Wonder why? I will,get blood counts tomorrow. I feel a little better this cycle, but who knows! I've been at 1.2 ANC pretty much the whole time. Hope it didn't go much lower, but so far, no infections, viruses, etc.
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Interesting about Neupogen since my onc originally said he would consider something like Neulasta if my counts go too low, but so far the nurse wasn't concerned because the %POLY A was 66.3 so she said I could still fight infections despite the low blood counts. Maybe they are just learning something about Neupogen (and maybe Neutlasta?) with Ibrance, too bad if it is incompatible, but I will ask him at my next visit. I am thankful for this site - first 2 weeks I took Prilosec with the Ibrance and would not have known about it being incompatible had I not checked this site, so thank you, Romansma for starting this thread - it is so helpful! Glad to hear Pearlady's advice helped Myra with the Platelets, that is a big improvement! RosesToses, glad to hear you got approved, and good luck with Ibrance!
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3Holly, I have never heard of the %POLYA blood test. Do you know what it is. Tried looking it up on Dr Google to no avail. Thx Myra.
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Yes, Holly, interested in that too. Maybe that's how infection hasn't been as much of a problem with Ibrance, even though the counts get so low.
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OK! The nurse just called to say I was finally approved for Ibrance! Now waiting for the pharmacy to call me and let me know the co-pay and let them know where to mail the meds. I have my Pfizer $10 Co-Pay card online and and hopefully I'll be able to use it until the end of the year. It looks like I'll get to join this little party, at least for the next three months until we see if it's working. :-)
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hooray Sandilee!
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Myra, The % Poly-A is just one of the lab results they ran when they took my blood at my last visit, not sure if they always do it since I don't see the %POLY in the prior blood test I took at another hospital closer to home a week earlier. My %POLY-A was 66.3%, and the nurse said you take the 66% (or your % Poly-A number) times the WBC count (mine was 1.65), and you're OK if the result is greater than 1.
So mine was .663 times 1.65 = 1.09 which she said means I can still fight infection since 1.09 is greater than 1.
Good luck, Sandilee, hope it works great for you!
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Hello, I have been doing a lot of stocking on this subject, I am about a week away from finishing my first round of ibrance and femara, I have had no side effects to speak of except for maybe a little sore throat , which I am not sure if that is from the meds or just a sore throat. Anyways I just wanted to say Hello to every one, and that I love hearing all of the good things from all of you. I am so hoping this is the drug we all have been waiting for.
I also asked the pharmacist from cvs Pharm. about the prilosec. She was unable to find anything about it and the ibrance, also she called Pfizer and they did not see a problem with it either. I did cut down , and am only taking it once a day and about 12 hours from the ibrance but They both didn't feel it was necessary.
I wish you all good luck and hope the best for all of us. I hope to keep hearing of all of your triumps!
Redroan
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Hi Redroan,
Glad to hear things are going well for you on the Ibrance. I really wasn't sure whether to go off Prilosec since it worked well, but I decided to try Zantac since another Dana Farber patient said protein pump inhibitors were prohibited in the Dana Farber trial she was on with Ibrance, and Prilosec does release for 24 hours (although not nearly as much after 12 hours, so my doc had the same advice you got, just keeping a 12 hour gap). If the Zantac doesn't work out, I may do the same with the Prilosec, but so far Zantac has been Ok.
I have not had a sore throat (I hope that yours will disappear soon and is not a side effect), but I have noticed I am extremely thirsty all night and need to keep a big thing of selzer beside me to keep from feeling dehydrated - maybe hydrating more might help your throat, you could give it a try. Good Luck!
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All,
A little info that I was able to find.......When the absolute neutrophil count (ANC) is less than1.0 or less than 1000, risk of infection is increased. Hope this helpful, although a little confusing because of the varying terminology for the same thing......Praying for all of us to be in the normal range.....
POLY, POLYS, and PMN stand for polymorphonucleocytes or polymorphonuclear neutrophils. On some lab reports, they refer to your segmented neutrophils and other times to your total neutrophils (both segmented neutrophils and bands).
Absolute neutrophil count (ANC): Neutrophils are the main white blood cell for fighting or preventing bacterial or fungal infections. In the CBC report, neutrophils may be referred to as polymorphonuclear cells (polys or PMNs) or neutrophils. The absolute neutrophil count (ANC) is a measure of the total number of neutrophils present in the blood.
A normal range for ANC is 1.5 to 8.0, which translates to 1500 to 8000/mm3.Sample Calculation
WBC count: 6,000 cells/mm3 of blood
Segs: 30% of the WBCs
Bands: 3% of the WBCs
Neutrophils (segs + bands): 33% of the WBCs
ANC: 33% X 6,000 = 2,000/mm3
ANC of 2,000/mm3, by convention = 2.0
Normal range: 1.5 to 8.0 (1,500 to 8,000/mm3)
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Thanks GDG, I was told the same about the ANC and 1.0. Last month mine was at .6 and my MO took me off. Some here have gotten low and kept on. Wish they all used the same terminology. Myra.
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sandilee. yea. Hoping lbrance does a great job.
Keep strong you pioneer women. So excited where this drug is taking mets
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Thanks for your cheers Patty. Maybe this could work for you at some point! Congrats Sandilee and Roses. I look forward to hearing how you do. Really hoping to hear some success stories here.
I had an appointment yesterday. Nothin new. WBC at 1.2, ANC at .6, and platelets 10.1. Low, but doable. My tumor markers went down slightly. They are down 8 points over the last 2 months. That's not much, but considering they had doubled in the previous 6 months, I'll take this downward trend as good news. Hoping to keep seeing it go down over the next few months. Even more, hoping Ibrance is a long term habit!
I had been feeling not too bad this past week, all things considered. However, I over did it yesterday. I had bought my husband Steely Dan tickets at the Santa Barbara Bowl for his birthday. We got there a little late because he had a 5k Corporte Games race after work last night. Anyway, I walked a couple of blocks to see him run his race, then a couple blocks back. When we got to the Bowl, the lots were full. We ended up parking about a mile and a half from the bowl. Then, we had to hike way up to the top because we had the cheap tickets. Then......all they way back afterwards at 10pm. Wow, I'm hurting today! I'm still in bed. Wonderful band. Incredible talent. Love the Jazz. Not sure I will buy tickets to the Santa Barbara Bowl anytime soon unless I take Uber or a taxi....better yet, a limo
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Hello ladies,
I'd like to join in the Ibrance discussion as I was recently approved and my pills arrived yesterday! I haven't posted in years, but have always been grateful the boards have been here to find great information, support and inspiration! I am 42 with 3 beautiful children 13,12,&9, they were only 5,4,&1 when my battle began 8 years ago I have been metastatic for 3 years and after taxol for the 2nd time, I tried aromasin, faslodex, arimidex and afinitor. I finally found great success on weekly Carboplatin infusions for the past year. I'm always anxious to begin any new treatment so if you could share your experience with side effects I would appreciate it! I read through many pages and found the majority have low counts. Seems silly after all we've been through- but gosh -really hoping there is no hair loss on this as I haven't had any on Carbo so I wouldn't want to give up that treatment for worse side effects. My kids always worry more when I have that visible sign of treatment
Thank you! May this be a successfultherapy for everyone! Margie
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welcome Margie, I hope the journey into Ibranceland is a good one for you. The MOs here are all trying their best to become comfortable with this new drug. We are all trying our best to get used to the blood counts. Good luck. Myra.
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Myra: Ibranceland!! :-)
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Hi Margie! I totally understand the hair thing. I have kids too and they are very sensitive to me losing my hair so I've been trying to stay away from anything that has that side effect. I don't think anyone here has reported that. The main side effect seems to be fatigue from the low counts. My second cycle was a little better than the first. I guess your body starts adjusting the energy expenditures with the perpetual low counts.
Night all you Ibranceland dwellers!
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Hello everyone, may I join?
I just want thank you all for your insight and to share my experiences on Ibrance as well.
I'm about to wrap up my first round and that giant slamming sound you hear is my counts hitting the floor. Red and white.... hemoglobin below 10 and white count at a dismal 1.6.
Onc says I should rebound next week when I'm off. Thank you pearlady for the info on the ashwaghanda. I will certainly be looking into it. I will also be asking my herbalist and onc if pau d'arco tea is ok. I just brought some back from Costa Rica and it is supposed to really boost the immune system. At the same time I don't want to take anything that would interfere.
Weeks one and two were pretty much side effect free, but I did notice some more intense hot flashes and some slight stomach upset. The fatigue seemed to catch up with me this week but I've tried to push through it with long walks. The upside is that some very sharp pains in my outer thighs have faded. Some general lower back pain remains but it is tolerable. I have some spine mets and onc suspected inflammation there was pressing down on a nerve. Good news is if the sharp pain is easing it's possible those cancer cells are shrinking *fingers crossed*
I am finding a few more hairs coming out than normal during hair washes but again nothing major. Here's wishing us all the best on this new med.
Romansma thank you so much for starting this awesome thread,
Kay
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Welcome Kaydee! Looking forward to your contributions!
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Hi Kay, welcome. Myra.
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Welcome, Kaydee. It's great to hear from another person who seems to be handling the SEs well.
My pills came in the mail today, and I will start them on Monday. I want to time the end of the cycle to my doctor's appointment next month to do the blood work, so I need to wait a couple of days.
I was wondering- are you all starting with 125mg? Has anyone moved down from there to 100mg, and did it help?
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Ibranceland here I come!!
I've been reading and absorbing since day one of this board. I was just diagnosed in January and started Ibrance in February. I was able to get in on the tail end of the clinical trial at the Hillman Cancer Center. Halfway through my third cycle. I've been reluctant to post because I'm still trying to figure out all of the lingo and counts. I am taking the 125 dosage; have also experienced more hair washing out; and energy comes and goes.
As a newly diagnosed Stage IV my biggest question is...are people able to continue working? I just requested a leave from work (usually work 45+ a week). I feel my body needs time to rest and adjust to the medication. Plus I think I mentally need time off to process everything. From what I have been told Ibrance has high hopes. So I'm hoping that after a brief rest I'll feel like going back to work. But if not, does any know if a Stage IV diagnosis enables you to disability? Not giving up just want to be prepared.
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Hi Sandilee, I started on 125 and got switched to 100 after my ANC went to .6 after 17 days. Now on day 15 and my ANC is low again and MO is threatening to stop it again. New blood work on Monday. He said this happens sometimes til your body gets used to it. Meanwhile TMs down slightly, but right side hurts. Was counting change last week for 2 hours and attributing to that. Need to put heat on it and see if it works.
Welcome PPAP. I have not experienced any hair problems nor have I been too tired. I think the hair thing is attributed to the femara. I also get flushed more than flashing. Hot during the night too.
Well, enjoy the crazy up and down, turns and twists of this bc stage VI dx ride in Ibranceland.
Have a great day all!! Myra.
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I know all the MOs trying to figure this out, Myra, but I've been at .6 with my ANC pretty much the whole time. No threat of dosage reduction and definitely no breaks. I don't know why there would be such a difference. I thought maybe it was your platelets last time. Anyway, just hoping you get to staywith us in Ibranceland!
Ppap, welcome, and thanks for posting. Sounds like you are a little ahead of us if you've completed 3 cycles. Good to hear from you! As far as working and disability, I find it too hard to work. Pain, fatigue, and even the cognitive side effects from the AIs make it too hard! If you decide to stop working, you shouldn't have any problem with SSDI. You can apply online. There are some things for your MO to sign. There is a 5 month waiting period that you cannot be working before the payments start. If you have short term disability insurance, that should fill the gap. Also, Medicaid doesn't kick in till after 2 years so you'll want to have your own coverage during that time. Anyway, glad you are taking a break. Too much to process while working so much.
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Hope, I have worried that my MO might be too conservative and careful. Seems like I have not had any tx work for more than two months. Last PET scan I felt was basically stable, but he thought there was slight progression. I read these reports for a living, I am a Tumor Registrar. I got switched again. He seems to be very wary with this drug. Am definetly considering a second opinion at Dana Farber, my brother lives in Boston and I would stay with him. As I have said before, making decisions is difficult lately. Never had this problem before. I have owned and run my own business for 30 years! Myra.
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Romana thank you for the information. My tumor is in my liver and causes me pain. I've also been having some cognitive issues but to continue working I have not been taking any pain meds. I think deciding to finally take my 70+ vacation days is the right thing for me to do at this point. I do have a short term disability policy if I need to use. It's the long term medical coverage that worries me. Since I am 49, single, with no children. My work and extended family have been my life for the last 28 years. I guess now I have to learn to make myself my #1 priority.
On day ten of third cycle. My end of three cycle scans are scheduled for the 30th. I amanxious to see the results of the Ibrance. I'll keep everyone posted.
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Thanks for the warm welcome ladies!
Sandilee, I'm just wrapping up my first 21 days on Ibrance and I am at the 125 mg dosage. Saw onc yesterday and my counts are low (hemoglobin, platelets and white cells) but he says he expects them to come up during the week off and did not mention lowering the dosage.
PAPP, take those days! And come on out of there if you can and you feel work is just too much. Be really good to yourself right now, kind to your body and your mind. If this Ibrance does the job for us, even if we come out on disability, we can always go back to work. As a recovering workaholic I know what a mental shift it is to make yourself your main focus - but YOU are the priority right now. Hoping you have GREAT scans.
Kay
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